Sunday, October 30, 2011

Sadly, receiving the news that your child has Down syndrome often fills parents with dread. Almost every parent of a child with DS that I have talked to since we received Wyatt's diagnosis has mentioned that time, that dark time when you don't know what to expect and you don't know what to do. I wish it didn't have to be that way.

At the time, I was literally at war with myself. I knew it wasn't a death sentence... I knew that it wasn't the worst case scenario. I had more information than most, being an RN. All that meant nothing. All my knowledge and experience went right out the window. Despite knowing the contrary, I felt that I had failed, that this was somehow my fault. This was one more thing that I had f☠cked up. Somehow I deserved this. I was embarrassed; I felt ashamed. I wished that I could reach into him and pull it out whatever it was that made him that way so that he wouldn't be that way any more. My mental image of two perfect twins smiling in the stroller with the cute outfits that my family had given me was gone. Shattered when the neonatologist shuffled over to us in the OR and carefully cleared his throat.

I've talked about that time briefly before... touched on it, roughed up the surface a bit. I described how I would suck up the pain, the exhaustion and head to the hospital and do what I had to do. The crying would come whether I wanted it to or not. In the shower. In the cafeteria. Holding my son while he slept as the NG tube delivered my milk to his tiny tummy. What I haven't described is how I watched his "upside down" AVSD altered rhythm on the ECG for hours, side by side with my daughter's normal one. I imagined in three months time, turning him over to the surgeons and getting him back intubated, with a big wound on his chest. When I was dressing him, I imagined him with a scar and it terrified me. I would trace my finger down his tiny sternum as I reattached his leads after his bath and I wouldn't know I was crying until the tears splashed his chest. Sadly, what was really fear from lack of proper information, the post-partum blues, accepting his heart diagnosis and dealing with NICU anxiety, was projected onto Wyatt's extra chromosome. It's unfair, but it happens all the time.

It's not like I didn't have support either. Most of our family and friends have been wonderful. My colleagues and the staff were wonderful, even if they didn't always know what to say. However, as I've said before, I did not know or know of anyone with Down syndrome. There was a lot of empathy, but little knowledge and no shared experience. Despite all the well meaning people, I was in a dark, isolated, hopeless place, projecting all over my newborn son.

Once I had started gaining insight, once I had started learning a bit more and had made contact with others in my place (and began self-educating) that darkness began to ebb. I joke at work that we shine lights into dark places. It was like that for me as little by little, candle by candle, my world began to brighten as I absorbed more and more about DS. I got to know my little boy in that time too. I got to know his little baby moods, his vocalizations, his smell. His routines and his likes and dislikes. The little things I could do to make things better for him, from extra burping to ensuring there was always something on his little blue feet.

I have since healed, I have moved on. Time and knowledge have healed my wounds and refocused my energies in a more positive direction. It hasn't always been easy, but we are here. One of the reasons that I started this was that I never wanted anyone to feel like I had again. Never. If I could reach out to one more mother residing in that dark place, I would. If I could help fast track someone from those early horrible days to where I am now, I most certainly would.

A few days after the babies were born I was wandering around in one of the rooms the NICU has for parents. On one of the shelves was a book of poetry written by parents of very sick and often terminally ill babies. It was meant to provide comfort. I found it ghoulish and after reading a few words, I shut it up and threw it back on the shelf with disgust. A few weeks later I stumbled across this publication and hoped that one day (hopefully soon) I could feel like this too. It is called "What Parents Wish They'd Known". As time went on, these words became more and more fathomable. One day, not so long ago, I read it again and realized that I had arrived at a new place, where these words are reality and not some distant dream.

Now, when I read it, I wish I could go back in time and seek out that Mom in the NICU watching the monitors as the tears fell. I wish I could go back and let myself know that it was going to be okay. Although it felt then that my own heart had stopped, I wish I could be able to tell my then self that it would start again. I would eventually exhale and everything was going to be fine.

I want to be able to reach out to new parents and let them know it will be okay. If the information I have given in the course of this blog has not been a strong enough safety line, if my voice has not been loud enough to echo-locate, then allow me to share more voices. Hopefully together we will be loud enough.

I wish I'd known the stands would erupt with cheers when she got a hit in baseball, and that her classmates would circle around her with love and protection if anyone was mean to her. I wish I'd known that "being slow" would mean savoring every step, every puddle, every blossom.--Michelle, mom to Ciarra (9 years)

I wish I’d known that it was ok to grieve and scream, cry, vent and be angry. I wish that a facility or network had been in place to reach out to me, instead of the other way around. I wish that every parent coming home today could see my girl and how she smiles and loves.
--Amy, mom to Larkin (2 ½ years)

I wish I’d known that this would be such a marvelous journey, and that everything would turn out . . . JUST FINE.
--Jackie, mom to Emily (28 years)

I wish that I had known that my broken heart would one day heal, and the love that I felt for my son was the cure.--Kristy, Mommy to Zachary John (3 years)

I wish I’d known I would look Avery and NOT see Down syndrome. I see her as this amazing, smart little cookie—strong-willed, self reliant, and cute as a button. She walks around like a little queen in a parade, waving, hugging, and talking to everyone.--Kathleen, mother to Avery (3 years)

I wish I’d known I was strong. My husband and I always thought we were the people who couldn't handle raising a child with Down syndrome. Actually,there’s really nothing to “handle.”
--Stephanie, mom to Megan (4 years)

I wish I’d known the pure joy, happiness, pride, love, and dedication that my baby would show us all. I wish someone would have told me that this baby was going to change my outlook on life, make me a better mother to his siblings, a better wife to his daddy and a better person to this world.
--Carmen, mom to Jaemen (3 years)

I wish I'd known that my son would develop a personality like any other child. I spent so much time wishing his babyhood away wanting to know what he was going to be like. I wish I had relaxed and enjoyed the sweet baby I had.--Ann, mom to John (5 years) 1

Finally...

I wish I'd known that we would be okay, that we would overcome all the obstacles together as a family. I wish I had known that there were thousands of mothers like me out there and that we all have felt this way at one time or another. I wish that I would have known that I would see him as "having" Down syndrome, not "being" Down syndrome and then not really caring about it at all. I wish I had known then what an adorable, funny little guy he would be. I wish I had known that his smile would wipe away any 12 hour work day and that his laughter would be like music. I wish I had known that despite all the testing that his heart would stabilize, he would not sicken like they predicted and that his surgery could be postponed until he was a toddler. I wish that I had known that he would be the sweetest baby on earth. I wish I had known all of this then, so I could have enjoyed that time together. I wish... I wish that I had known that he and his twin sister were exactly what we needed.
--Jen, Mom to Wyatt (8 mos).

Saturday, October 29, 2011

Aside from being counted (by some) as being in the top 10 ball players of all time, aside from just winning the World Series with his team the St. Louis Cardinals, aside from playing and living clean, aside from being a husband and father of four, Albert is a humanitarian.

I have been saving this for today, the last Story Time Saturday of the 31 for 21 Challenge. It is a fabulous story of one man and his tireless efforts to aid and give voice to those who need it. He is an inspiration to many and living proof that you can make a difference, one person at a time.

Friday, October 28, 2011

People with Down Syndrome can have a variety of medical issues. Previously we have explored Eye and Ear problems, Atlantoaxial Instability and mentioned cardiac and bowel conditions. We have also looked at some of the more common physical features of Down Syndrome. As this is our last Factoid Friday (for a while...), here are additional medical concerns that can commonly occur with Down Syndrome. It is important to note that none of these conditions are exclusive to DS; these exist in the greater community all on their own. However, they are listed here as there is a slightly higher incidence among people with Trisomy 21.

Although this list is long and seemingly scary, it really isn't. Most people with Down syndrome only have a few random things on this list (some of which are temporary conditions). Even the most severe ones (such as AVSD) can be managed surgically and very successfully.

Thursday, October 27, 2011

Speech can be very difficult for those with Down syndrome. Due to delays in memory and aural learning, as well as co-ordination issues due to lack of muscle tone and control, speech develops very late compared to "typically developing" peers. Most actual speech therapies start after the first year (about 18 months of age), which begs the question, what can be done in the mean time?

One of the areas that you can work on with your infant is developing the face and mouth. These are the same exercises that one would use to strengthen the facial/mouth muscles and increase sensation in preparation for eating. These techniques are courtesy of ICDSP:

Facial massage: Using two fingers or your thumbs, stroke the baby's face from the upper cheek close to the ears down to the corners of the mouth. Then, stroke down from under the nostrils to the top lip. (Do this 3 or 4 times a day before eating)

Palatal massage: Insert a clean finger into the baby's mouth and stroke the roof of the mouth (the palate) from the middle to the side, stopping at the gum line. Return to middle and continue to other side; repeat 3-4 times prior to every feed

Gum massage: Trace along the gums with firm pressure from the front to the back on each side, top and bottom. Do this 2 to 3 times, twice a day.

Chewing/Toy Mouthing: introduce and encourage the child to use a variety of teething rings, soft toys and feeding utensils; introduce horizontally and to the side to encourage biting of the toy. Do this 3 to 4 times, each side.

Along with these techniques is the single most effective tool to strengthen the oral muscles: breastfeeding. As it provides more resistance than bottle feeding, it encourages the development of the muscles of the lips, cheek and tongue and enhances the coordination of these with breathing. Soother use is also encouraged for this reason.

Another area that can be worked on is sound recognition. As children with Down syndrome are primarily visual learners, the goal is to help the infant link sound with facial expression. When the child is alert and relaxed, find a comfortable position that places both of you at eye level. Remove any background distractions such as a radio or the TV and make eye contact with your child as you make sounds. As you make each sound, monitor your baby for any reaction. Encourage repetition by repeating any sounds that he or she makes. You can make non-speech sounds (which include clicks, pops, "raspberries", etc) or speech sounds (which are repeated consonants or vowels or combination). Make exaggerated examples slowly and clearly to help the baby hear and react to the sound.1

Talking, singing and playing with your baby face to face will also encourage the little one to pay attention to sound. Ensuring optimum hearing through frequent assessment will also help them acquire language.

Although statistically, many children with Down syndrome do not learn to talk until much later than their typical peers, it is possible to help them prepare for this eventuality. By encouraging strong facial muscles along with memory, speech and language skills, the child will be able to speak more clearly and have an increased vocabulary. Which, is extremely important for those very first spoken words.

I won't say "Mama" for a while yet, but it will be phenomenal when I do.

Wednesday, October 26, 2011

Last Wednesday was our final meeting for our DS group put on by ICDSP. We only had 6 weeks together, but it gave us the opportunity to meet other parents of babies with Down syndrome and learn a lot more about what we can do to help our children along. I was only able to go half the time, which is an unfortunate side effect of my wonky schedule.

As it was our last day together, we cleaned up some odds and ends and the babies were evaluated. I also brought the camera and quickly whipped off a few shots. I would have liked to get more, but it was near the end and my two were getting fussy, so I only have a few (we were also missing a member as well).

I can stand! Yay!

First of all, Zoe has a new trick. Actually she has two, but I haven't gotten a shot of her sitting yet. She can pull herself to a stand using whatever is handy (my pant leg, the table, my hair... in this case it was Daddy's hand). She is very happy with it (and we are scared).

Wyatt is evaluated

There were 6 babies in the group, ranging from Wyatt at 7 months (and Emma who shares a birthday with my twins) to Nyal who was only six weeks old when we started. It was cool to see other Moms at the start of their journey and listen to similar stories, such as time in the NICU, feeding difficulties... stories involving an NG tube. Although we shouldn't compare our children, there was a lot of that as well. Who had what symptom? How had the extra chromosome manifested in the other children? There was a lot to learn from one another and shared experience is truly important.

Our group leaders hosted and evaluated every week. Through them, we learned to put our positioning exercises into practice and recieved a multitde of helpful tips on how to improve the lives of our children. (some of which have been shared here over the course of this month). There were special guests, such as an OT and a speech therapist who laid the foundation for work later on.

Wyatt exercises

Wyatt and Emma

Wyatt much prefers to be without pants it seems; at least that is what he seems to be demonstrating by only playing with his feet when he is without them. Linda showed us that with a simple towel roll we could encourage Wyatt to continue to grab his feet and develop his leg, arm and abdominal muscles as well as improve his body awareness and sensory input. That's a lot of responsibility for two little feet.

Gotcha, Emma!

Hopefully we will see everybody again, if only to check in once and a while. As was to be expected with a random sampling of children with Down syndrome, we all face very different challenges. One child has already had several club foot surgeries, one had severe choking issues while eating, one had digestive issues that rivaled the little girl in the exorcist... etc. The early days after a diagnosis of Down syndrome can be challenging. There is a lot of adjusting that everyone has to do that is unique to each family. It was wonderful to see each parent become more skilled with their child (including us) as the six weeks progressed. I'm going to miss our time together. Hopefully we can make good on the exchanged lists of information.

Many local organizations offer groups such as this one for new parents. I would highly recommend this to any new parent of a child with Down syndrome. Just as Mother Goose helped me in the early days to become closer with all my babies, this group helped both of us to become even closer with Wyatt as we addressed his specific needs. We have seen distinct improvements after employing some of the techniques we learned there. Armed with these new tools, both of us feel encouraged. For that alone, I cannot thank the group enough.

Tuesday, October 25, 2011

One of the most common questions I get asked is "how is Wyatt developing?" When I don't have an easy, static, predictable answer (such as "he's working at a ____ month level", for example), I get a lot of confused looks. With that in mind, this Teaching Tuesday is dedicated to development in the child with Down Syndrome, from birth to 5 years of age.

Each child with Down Syndrome is different. Although all with Trisomy 21 share a third copy of the 21st gene (for example), how that gene expresses itself varies from child to child and is unique to him or her. This also applies for both Translocated and Mosaic Down Syndrome. As the physical aspects vary, so do the developmental delays that each child faces.

It is also important to understand how children develop. Most children acquire and hone new skills and achieve 'milestones' that are not a result of direct teaching (with a few exceptions, such as counting, reading and toilet training). Instead, children learn in the family setting, by being encouraged and modeling behaviour in a social environment. Parents shape appropriate behaviour, language and actions by being sensitive and responsive to needs and rewarding where this has been achieved. A wide range of learning and social opportunities are explored in the context of the family, as well as through books, toys, outings and social interactions. (Buckley, Sacks, 2001) By comparison, children with learning disabilities may have to be actively taught certain skills due to their individual deficits.

Monday, October 24, 2011

For today's Medical Monday, I am featuring a condition that affects up to 30% of people with Down syndrome. It is called Atlantoaxial Instability (or AAI for short) and can cause serious problems if it is undetected.

The spine is made up of large bones called vertebrae which surround the spinal cord. These are divided into groups or sections for the purpose of descriptive location: there are 7 cervical (red), 12 thoracic (blue), 5 lumbar (yellow) and the pelvic (green). The first vertebrae (C1) is referred to as "atlas" and the second (or C2) is referred to as the "axis". Muscles and strong ligaments allow movement, including flexion (forward tilt of the head) and extension (backward tilt of the head).

Most people with Down Syndrome have hypotonia or low muscle tone and often have hypermobile joints (due to lax ligaments). When this occurs, C1 and C2 can become misaligned; this is referred to as Atlantoaxial Instability.

Many people (10-20% of people with DS) have what is known as 'asymptomatic' AAI (as in not causing them any symptoms). This is found on an x-ray which should be routinely performed around the age of 3. However, 1-5% have 'symptomatic' AAI, which causes a variety of problems.

When the atlas and the axis are misaligned (also known as subluxation), the spinal cord inside can become compressed which can cause serious symptoms and even death. Among those symptoms are:

If any of these symptoms are experienced by a person with Down syndrome, they would require a full work up by a Neurologist, which might include X-rays, MRI and CT scans. Surgical stabilization of the joint may be necessary, however depending on the severity of the AAI, other treatments such as traction, collars and muscle relaxants may be prescribed.

Those with asymptomatic AAI would require no treatment, however sports would be limited to no-contact and low impact and a brace might have to be worn for protection.

Those without either condition are still recommended to have a neck (or 'cervical') x-ray series done and wear neck protection if playing contact sports.

Sunday, October 23, 2011

I stole the title for this entry from my friend's blog; it completely embodies what this one is about. Having a child with or without special needs can be seen as overwhelming and very stressful if you lack the proper information and supports. If you or your family have a history of things such as depression and anxiety, you are particularly at risk. Who we are at the start of this journey will dictatehow we as parents react to things as they come up; negativity can affect every member of the family. I have seen it over and over again with my Mental Health patients and their families. Burnout is a scary reality when you perceive yourself to be alone and helpless. It doesn't have to be this way however; there are specific things that you can do to help alleviate your stress.

There is a fantastic online book by Sue Buckley called Issues for families with children with Down syndrome. It is a great read as helps the user define how the family unit itself works, what challenges will intercept it and what can be done to maintain a happy life for all. In the chapter "Positive strategies for families", she outlines a series of basic strategies to address caregiver and family stress. I've paraphrased and added a few things a bit to suit my own needs, but you can find the original here.

1) Identify strengths and weaknesses [Know your limits!]

Look for resources and support. [Support can be emotional or friendship oriented, for advice, for information, for advocacy or include professional services. Could be from family, friends, the community and parent support groups.]

Take control and become an informed consumer. [Learn what is best to meet your families needs as a whole both with time and energy. Learn to say no, learn to reschedule, learn to be in charge]

2) Parents need to look after each other and their own health [Be gentle!]

Focus on the whole family and a happy family life. [All family members and the family band are important. Family life, goals, etc should not be totally disrupted to accommodate one person in particular]

Establish settled routines for your child and encourage good behaviour. [This includes therapy sessions, appointments,etc., which can interfere with attempts to establish good routines]

Make full use of community and neighborhood support [It is worth the time to assess family, friends, the neighborhood and the community for the availability of emotional or practical support for you, your child or the rest of your family. New programs or situations may have made something that once seemed impossible, now plausible.]

Make full use of services and professional support [Resources are regional. Find out what is available to help you emotionally and financially. Work with your professionals to achieve what is best for you and your family]

Belong to a local parent support network [Parent groups offer a variety of support from emotional to practical to advocacy. It is helpful to talk to others with shared experience]

Make use of advocacy support when battling for services [Parents groups can be strong voices in changing regional policies or availability of services]

3) Identify any child factors that cause stress and seek help in resolving them [Seek help!]

Use respite care to take a break and to reduce restrictions on family activities. [You cannot accomplish these things if you are tired or burned out from any number of factors. Rest or spend quality time with other family members]

Resolve to change or reduce difficult behaviors [Behavior modification of one's own reactions to stress and developing more understanding of your child and their needs can provide relief for the whole family. This may require professional intervention, yet it is worth it for the sake of the whole family unit]

I can't say that I have mastered all of these points, but I have found it a very useful framework. Know your limits, be gentle to yourself and seek help when and where you need it. It will take time to establish routines, to set up resources and supports but it will be truly worth it. Educating yourself is one of the best things that you can do as a parent, whether you have a child with a disability like Down syndrome or not. If you have found yourself having difficulty, re-evaluate. Get your supports in place, get your routines established. Once you know the path you and your family will take, you will feel like you will be able to breathe again.

Saturday, October 22, 2011

Back in January (what seems like a million years ago now), when we learned of Wyatt's diagnosis, I started my search for stories similar to mine. I never had anyone in my life with Down syndrome... in fact I didn't know anybody who did. I certainly didn't know of anyone who had multiples where one was "typical" and one had DS. One of my major stumbling blocks was just that... no one that I was coming across had ever seen it either.

I kept searching as our case it had to be more than just theoretical. Near the end of February, I found this story: The Twins who are 'one in a million'. I found this story comforting; not only did other twins like ours exist, but they did not seem to be bothered by a few nagging questions that I was ruminating on at the time (What kind of life would Zoe have? Would Wyatt be accepted by her friends? His peers? Would both of them have a social life? What would life look like at 18?... and so on). In the early days I read this story over and over. Shortly after, I found this one: When 1 twin has challenges, the other steps up. I found this one comforting as well.

The search went on. I was posting on a few DS places, looking for people in a similar situation when I was contacted by Shannon, who now writes under the name of "Justylou". She has twin boys that are 11 now; Davey has Down syndrome and Will does not. Through her blog I have been able to see the future. It contains normal, happy things, just like any other family. Her blog is called "Love life and be gentle". She ends every entry that way, "Be gentle". I strive to to emulate this every day. Be gentle to those around you, be gentle to yourself. I can't thank this lady enough, for her tireless efforts (she blogs almost every day) and for reaching out to me when I was floundering. She too is participating in the 31 for 21 Challenge.

Shannon was also kind enough to point me towards Multiples DS Listserv, a Yahoo Group for parents of multiples where at least one has Down syndrome. If my sense of isolation hadn't started to erode by this point, it surely dissolved that day. Twins, triplets, even quads (!) where some or one had DS and the others did not. A whole group of people that know exactly the double whammy of having multiples and special needs. I have learned so much from these folks. It always helps to network and to have someone to talk to that knows exactly what you are experiencing.

Initially, It was daunting to be faced with twins: even more so to have one of them with a "visual" disability that we would not know the total extent of for years. As I've said, I can't describe how reassuring it was to be in contact with other families that faced the same challenges. Knowing you are not alone is a key part in your journey. I would recommend networking as one of your first priorities when and if you find yourself in shoes similar to mine. We did and our lives were enriched by the people that have entered it. People, just like us.

Friday, October 21, 2011

It may be difficult to breastfeed your child with Down Syndrome in the beginning. I had to train Wyatt to latch properly and then how to eat without either choking or exhausting himself. I was asked many times by (mainly) well meaning friends why I would bother. I would mumble in my sleep deprived haze about antibodies and future weight issues. Today's Factoids, now that I am a little more coherent, are good reasons why you should breastfeed your baby with DS.

1) Breastfeeding provides antibodies and protection from illness. Children with Down Syndrome are susceptible to bowel and respiratory issues. Breast milk provides antibodies to fight infection and is easier to digest than formula.

2) Breastfeeding improves mouth and tongue co-ordination which will aid in speech and language development.

3) Breastfeeding promotes increased brain growth due to DHA, a fatty acid that is not found in most formulas or cow's milk. Breastfed children score higher on IQ tests than those raised on formula; this brain stimulation is particularly important in learning disabilities such as Down Syndrome

4) Breastfeeding provides the opportunity for extra sensory stimulation as there is more skin to skin contact.

5) Breastfeeding fosters closeness. It offers more time to cuddle and spend time and get to know a special needs baby better. It also boosts the mother's self esteem by providing a way that she can do something meaningful for her child and their health.

6) Breastfeeding enhances mothering skills. The patience, encouragement, coaxing and teaching used to help the baby learn to breastfeed will be employed over their lifespan to help them reach their goals.

Thursday, October 20, 2011

If you haven't realized it by now, hypotonia is one of, if not the major problem for people with Down syndrome. The muscles are not only slower to respond and can be weaker overall, but they also have reduced endurance. Ligaments are more elastic and joints more movable which often causes unstable motion. Compensation is common whereby a child will learn to use one set of muscles as an alternative for a weaker set; this will cause improper motion and often result in chronic pain. Obviously, since Wyatt is still a little baby, we can't tell him to drop and give us twenty or get him to blast on his quads. So what then?

Most of what we can do for Wyatt (at this stage at least) is through play. Thanks to our OT and workers from ICDP, we have a series of positions to allow him to play in which will help build specific muscles and develop specific skills. Each of these corresponds to a specific stage of where the child is positioning themselves (Supine - on their back, Prone - on their stomach and then sitting) The following information is courtesy of Positioning for Play: Home Activities for Parents of Young Children by Rachel B. Diamant (1992).

Child Lying on Back, Facing Parent (Supine)

Sit on the floor with your back supported by a couch, chair or pillows. Stretch your legs out in front of you and place the child between your legs. Support their head with a small pillow or blanket roll. Bring the child close to you so that their bottom is close to your body and that their legs and knees are bent. Ensure their arms are down and close to the body. Ideas for play: Hold a toy and encourage the child to reach for it and explore, sing songs, play patty cake, try baby massage or use wrist and ankle rattles. Encourage the child to reach their feet.

This position:

Encourages the child to keep the head in line with the body with the chin tucked and the body straight

Encourages the arms to be forward and down and the hands to come together

Encourages the hips to be bent, the legs together and relaxed

Develops eye contact with parent and own lower extremities

Enables reaching, hands to touch each other, the body and toys

Develops stomach muscles

Reduces arching

Child on Your Lap (Supine)

Place yourself on a comfortable chair or couch with your feet on an ottoman or coffee table so that your knees are at a 90 degree angle. Place your child on your lap, facing you so that their legs are on your chest (with their feet reaching for your face) and their body is resting on your thighs. Keep the child's legs together and their bottom securely against your waist. Hold their hands or shoulders to keep their arms forward and rest their head on a pillow or blanket roll to ensure the chin is tucked in. Ideas for play: Sing songs, make faces, imitate sounds, use ankle rattles, baby massage, place a toy on the child's stomach to encourage them to explore it.

This position:

Encourages the child to keep the head in line with the body with the chin tucked and the body straight

Encourages the arms to be forward and down and the hands to come together

Encourages the hips to be bent, the legs together and relaxed

Develops eye contact, hands and legs

Enables the hands to reach and touch legs/feet

Develops stomach muscles

Reduces arching

Maintains the flexibility of the legs

Child Lying on Parent's Chest (Prone)

Lie on your back with your head on a pillow and place the child on your chest so that they are looking at you. Hold the child at the chest so that they can support themselves on their elbows. When they can support themselves on their elbows, support their bottom in order to facilitate them lifting up their chest. Ideas for play: Encourage head and chest lifting by singing, talking, making funny noises/faces, move in a slight bouncing or rocking manner to accustom the child to movement, encourage them to touch your face.

This position:

Develops head control

Developms muscles in the arms, shoulders and back

Encourages child to be comfortable lying on his or her stomach

Child Laying on Stomach, Propped up with a Towel (Prone)

Place a towel roll under the child's chest as they are lying on their stomach. Bring their arms forward, insuring they are in front of the towel. Push down gently on their bottom if they require more assistance to push up on their elbows/hands. Ideas for play: place a safety mirror, pictures or interesting toys in front of of the child. Encourage them to explore a fuzzy toy.

This position:

Encourages the head to be up and be in line with the straight body and the chin to be tucked.

Encourages the arms to be in front and out from under the child (or behind)

Encourages the elbows to align under or in front of the shoulders and the hands to be forward

Encourages the hips to remain straight, flat and the legs to be parallel and not splayed.

Develops head control

Develops arm, shoulder, back and neck muscles.

Child Lying on Stomach, Supported by Parent (Prone)

With your back supported by a piece of furniture or pillows, sit on the floor and lay the child on their stomach in front of you. Hold one hand under the child's chest and place the other on their buttocks. Lift the child's chest with your hand and encourage him or her to push up on their elbows. Keep the child's bottom flat and the arms in front of the shoulders. Ideas for play: place a safety mirror, pictures or interesting toys in front of of the child. Tap the chest lightly as you encourage them to lift.

This position:

Develops head control

Develops arm, shoulder, back and neck muscles.

Encourages the head to be up, in line, the body straight and the chin tucked

Encourages the child to prop up on elbows or push up chest with arms straight

Encourages the arms and hands to be forward and the elbows in front of or in line with the shoulders

Encourages the hips to remain straight, flat and the legs to be parallel and not splayed.

Child Sitting on Parent's Stomach (Sitting)

Lie on on your back with your knees bent and a pillow under your head. Place the child on your stomach, facing you, with their back and hips against your thighs. Make sure their legs are 90 degrees to the rest of their body. Hold the child by the hips and help them balance; ensure the arms and legs remain forward. Ideas for Play: Gently rock and bounce to encourage balance. Sing "riding songs" and play horse. Imitate sounds and each others expressions.

This position:

Develops head control

Develops back, body and hip muscles

Develops balance

Develops eye contact and facial expressions

Encourages the arms to be free for play

Encourages the head to be up and be in line with the straight body and the chin to be tucked.

Encourages the body to be straight and upright, the shoulders down and the arms forward

Encourages the hips to bed at 90 degrees

Encourages sitting properly, not sitting on tailbone

Child Sitting on Parent's Leg (as Parent Sits on the Floor)

Sit with your back supported by a piece of furniture or cushions. Sit the child on one of your thighs so that the child's feet are flat on the floor. Support the child with your arm, sit them close and ensure their hips are bent to 90 depress. Ensure the arms are forward. Ideas for Play: Sing riding songs, bounce gently and play horse, introduce and hold a toy for exploration, read a story.

This position:

Encourages the head to be upright, straight and inline with the body while the chin is tucked

Encourages the shoulders to be down and the arms forward

Encourages the hips and knees to be at 90 degrees while the feet are flat on the floor

Encourages sitting properly, not sitting on tailbone

Encourages the arms to be free for play

Develops head control

Develops back, body and hip muscles

Develops balance

Child Sitting on Parent's Lap while Parent's Legs are Crossed

Sit with your back supported by a piece of furniture or cushions and sit cross-legged. Sit the child in your lap with their back and bottom are close to your body. Place their legs over yours so that their hips and knees are at 90 degrees and their feet are flat on the floor. Support the child's chest if need be with one of your hands. Ensure their shoulders are down and the arms forward. Ideas for Play: Singing finger play songs, patty cake, etc, take apart or put together snap together toys, sing riding songs and gently rock or bounce.

This position:

Encourages the head to be upright, straight and inline with the body while the chin is tucked

Encourages the shoulders to be down and the arms forward

Encourages the hips and knees to be at 90 degrees while the feet are flat on the floor

Encourages sitting properly, not sitting on tailbone

Develops head control

Develops back, body and hip muscles

Develops balance

Encourages arms to be free for play

Reduces arching or extension of body in children with tight muscles

Child Sitting on Parent's Lap while Parent Sits on Couch or Chair

Sit on a couch or chair and sit the child on one of your thighs and put their feet flat on the couch (between your legs). Support their head and back with your arm, ensure their shoulders are down, their arms forward and the hips and knees are bent at 90 degrees. Ideas for Play: Sing riding songs and play horse, introduce a new toy to explore, read a story.

This position:

Encourages the head to be upright, straight and inline with the body while the chin is tucked

Encourages the shoulders to be down and the arms forward

Encourages the hips and knees to be at 90 degrees while the feet are flat on the furniture

Encourages sitting properly, not sitting on tailbone

Develops head control

Develops eye contact

Develops back, body and hip muscles

Develops balance

Encourages arms to be free for play

We have found that many of these are positions that we naturally hold him in. It is also great to be aware of what skills we are honing or what muscle groups we are helping to develop. Also the play portion keeps it from being "work", which is nice for all of us. Both the babies love their floor time and it feels good for us to be doing something that will help Wyatt develop to the best of his ability.

Wednesday, October 19, 2011

If a picture is worth a thousand words, then a video clip must be worth, what? A million? Two million?

I've been asked to post more of these by a few of you. I am also exhausting myself, so to keep an easier pace (as we are just over halfway through this challenge), I'm going to let them tell you how they are doing this week.

Both are chewing constantly... those teeth are coming in but extremely s-l-o-w-l-y. They are grumpy at random and everything is chew, chew, chew! Wyatt likes one particular red chewy; it's different sections have different textures and by chewing on all of them he is developing his facial, mouth and tongue muscles. Zoe... well, she is just a ham (who always loses her soother). I tried to get Wyatt doing a few things, but Zoe had a "tookie" crisis and tried to climb up on my knee. Yes, that is black nail polish.

Round two. Tried to get more of Wyatt, but Zoe dropped by for a visit.

Tuesday, October 18, 2011

As current data suggests that DS occurs in 1 out of every 700 or so births, you would think someone would have noticed it before 1858 (perhaps in every culture since the dawn of time). That would be correct. As Down syndrome has been stigmatized and de-stigmatized at several points in human history, the physical evidence is few and far between. However, it is still there.

From Prehistory

There are several instances of material evidence from prehistory that experts believe depict Down syndrome. Clay tablets from Babylon dating back to 4000 BC record congenital 'malformations'. Included are 62 human 'malformations' (and associated prophetic relations). There is evidence from the Paleolithic era (18,000 years ago) which may depict Down syndrome or a related condition. Taurodontism has been found in two teeth of this era, which is often associated with chromosomal disorders such as trisomy 21. (Savona-Ventura, ?). A skull from a monastery at Breedon-on-the-hill in North West Leicestershire in England dates to approximately 700-900 AD and is alleged to have numerous features typically seen in individuals with Down syndrome. Among those listed are an overall reduced size, microcephaly, a smaller skull cap, small maxilla, smaller skull length, thin cranial vault bones, smaller face and cheek bones, brachycephaly, thick mandible, mandibular prognathism and irregular tooth development. (Starbuck, 2011).

Tolteca terracotta figurine

This terracotta figurine from Mexico dates to the Tolteca culture (approximately 500 AD) and depicts facial features that suggest Down syndrome: small, up-slanting eyes, a small face, noticeable tongue, a weak nasal bridge and an open mouth.

Olmec Were-Jaguar

Olmec mother holding jaguar child

One of the more disputed theories lies with the Olmec culture (also of Mexico) which existed from roughly 1500 BC to 300 AD. The surviving art of this culture often depict jaguars mating with older women of the tribe to produce 'jaguar-babies' or 'were-jaguars'. It has been put forth by numerous sources that these 'jaguar babies' probably had Down syndrome based on the fact that they were a) born to older women, b) were depicted with sharp teeth (possibly ectodermal dysplasia), c) had small, slanted eyes, d) had flattened noses, e) were often rounder or more overweight than other representations of children (hypotonia and hypothyroidism) f) were often depicted in unusually flexible positions (suggesting hypermobility), g) when depicted as infants, were depicted limp (hypotonia again) and h) had cleft heads (enlarged metopic suture). Again, the physical evidence is moderate at best making this a widely disputed argument in the anthropological world.

The Tumaco-La Tolita culture of Columbia and Ecuador (600 BC to 350 AD) is known for depicting a variety of diseases and ailments in their work. One figurine in particular is suggestive of Down syndrome (Bernal, Brecino, 2006 and Starbuck, 2011) as it depicts a short, obese person with small, up slanted eyes, an open mouth, a small nose with depressed bridge, a small face relative to the rest of the head, a protruding jaw and thickened fingers.

Historical Evidence Potentially Depicting Down syndrome

One of the oldest is a painting from roughly 1505 referred to as "Ecce-homo-scene". It has been put forth that the child depicted in this painting has the characteristics of Down syndrome. The eyes are small and slightly up slanted, the neck is broad, the ears small and low set, the face small compared to the rest of the head, there is a weak nasal bridge, the mouth is open and there is an overall stocky appearance. It could be inferred from this painting that the child is a type of street performer; in fact there is a monkey on a leash which is grooming the child's hair. Sadly, this last aspect would fit with the times. (Starbuck, 2001)

The next are a series of religious paintings that have been attributed to Andrea Mantegna (1431-1536). The first, Virgin and Child with Saints Jerome and Louis of Toulouse (approx 1455 AD) depicts a child with up slanted small, widely spaced eyes, an open mouth with a protruding tongue, short digits with an in-curving 5th finger and a weak nasal bridge with a "button" nose. Also notable is the hypotonic or relaxed facial expression.

Around 1460, Mantegna created Madonna and Child which has also been suggested to exhibit characteristics of Down syndrome: epicanthal folds, small narrow eyes, an open mouth, hypotonic expression, flattened nasal bridge and button nose.

Also from (approx.) 1460 AD, is a painting entitled Virgin and Child which experts believe to also exhibit characteristics of Down syndrome. Among those listed are: epicanthic folds, oblique eyes, open mouth, protruding tongue, in-curving 5th finger, widely spaced first and second toe, a smaller head, a short, broad neck and hypotonic facial expression.

It has been suggested that the reason for several of his paintings having children with Down syndrome features (while others notably do not) is due to the claim that one of Mantegna's 14 children had Down syndrome and one of his patrons, the Gonzanga family, also had a child with Down syndrome (which reportedly died at four years of age). (Starbuck, 2011)

One of the most famous examples is found in the Flemish painting The Adoration of the Christ Child, created around 1515 by a follower of Jan Joest of Kalkar. There are two individuals in this painting that have strikingly different facial features than the others and it has been argued that they depict people with Down syndrome.

The first figure is an angel to the right of the Madonna. Unlike the Madonna, the angel figure displays a flatter than normal face, up-slanting narrow eyes, epicanthic folds, flattened nasal bridge, upturned button nose, a downturned mouth and shorter than normal digits.

The second figure is a shepherd boy located in the background. It has very similar features to the previous angel (ie: flatter face, up-slanting narrow eyes, epicanthic folds, a flat nasal bridge, a button nose and a downward turned mouth). This figure however, also has widely spaced eyes and a hypotonic expression on the face. It is to be noted that there is a second "daytime" version of this painting where these characters are more typical looking. (Starbuck, 2001)

It is well known that those with disabilities, both learning and otherwise have been scorned, ridiculed and even regarded as evil throughout the ages. Even Aristotle stated in his Politics: "...as to the exposure and rearing of children, let there be a law that no deformed child shall live." This has persisted right up to modern day and beyond John Langdon Down. With this artistic evidence, it makes one wonder if not everyone felt this way. Aside from the were-jaguars, it is interesting that there are two separate versions of the Adoration of the Christ child and that the infant Jesus was depicted in such a manner. I would like to think that this would suggest that small pockets of free thinkers, small groups of people who were touched by Down syndrome saw beauty, not an abomination. I would like to think that there have been people throughout history that did not fear and despise those that were different, but rather saw them as something special. So much so that they would depict their 'Savior' with those same characteristics.

Monday, October 17, 2011

Not only does hearing allow us to experience the sounds around us, but it plays a major role in the development of speech. Children with Down syndrome can have a variety of hearing issues, both congenital and acquired, which if not treated can lead to greater problems.

Congenital disorders of the ear generally involve a sensorineural issue (whereby the sensory information is not transmitted or received by the auditory nerve properly). Often this involves the higher tones and is therefore not discovered until later on (as the child would continue to hear many of the sounds around them) and would therefore impact on their development (especially with speech). Routine screening allows for the discovery of congenital ear disorders. Down syndrome may affect any or all of the structures in the middle and inner ear.

A build up of cerumen (ear wax) can easily interfere with the functioning of the eardrum. If mobility of the eardrum is decreased, the sounds transmitted to the middle ear will be decreased as well. This is easily treated by a variety of measures including drops and suction removal by a qualified professional.

Those with Down syndrome can be more susceptible to more infections than the general population and as a result have a higher incidence of ear infections. Over time and especially if left untreated, these infections can cause damage. Fluid buildup in the middle ear, a ruptured tympanic membrane (eardrum) and difficulties with the ossicles can all result from infection.

As well, a condition commonly referred to as "glue ear" can develop. Sticky mucus can accumulate in the middle ear which can literally encase the ossicles and prevent them from vibrating (and therefore, transmitting sound). People with DS can produce more or stickier "glue" which frequently becomes infected as it does not drain away. Further hindering drainage is overall smaller Eustachian tubes in those with Down syndrome as well as the tendency for these tubes to be sharply curved.

With both of these conditions, antibiotics are most often prescribed. If the fluid or glue buildup is persistent, the child may have to undergo a tympanostomy and have "tubes" or grommets placed in the eardrum to allow the fluid to drain away.

As with any potential problem, early intervention is the key. Have your child assessed early by a trained audiologist and your medical team to prevent and minimize the chances of long term hearing loss.

Sunday, October 16, 2011

Sundays start out with that promise of sacred time. I'm not talking in the religious sense; it always starts out feeling like stolen time for you and your kids. You may get to sleep in a bit. Breakfast will be involved. Coffee will be savoured. Fun things will be planned for the afternoon. These things rarely come to fruition however as the illusion of Sunday morning is usually shattered by 10:30. By crying. Sometimes it's actually the kids doing that.

I'm often asked questions like "how do you manage" or "where do you find the time?". Other than my usual stunned look, I often answer with "I don't know" or "when I figure it out, I'll tell you?". The truth is, time is pretty finite in the waking hours. When I am off (and not actually sleeping after my night shifts), I have a limited amount of time to get everything [read: anything] done. Period.

Our 'day of rest' usually goes something like this:

Assuming one of us isn't already up by 6, Quinn gets up around 7-7:30 ish. There is usually quiet cereal and TV. The babies wake up somewhere around 8:30 or nine and the feeding commences. Two babies get their bums changed, two babies get dressed and brought downstairs for some floor time (they spend a lot of time on the floor to build their muscles). There is a "Medela moment". We are now somewhere around 10:00 or 11:00.

Lunch is discussed and then abandoned as a topic as we are inevitably interrupted by one of/all of the kids or in a forgetful stupor one of us decides to wander away to try and complete at least one simple task (ie, throw in a load of laundry, unload and reload the dishwasher, fold a load of laundry, what have you). We usually opt for brunch at this point as quiet cereal and TV were some time ago. We haven't eaten yet (or Sean has eaten lightly) and Quinn is now ravenous and screechy. Sean either makes something lovely or "quick and dirty". I wolf my food in between separating/rescuing/soothing/cleaning/redirecting at least one baby. Quinn has resorted to making "crafts" out of everything in sight. Small bits of paper are removed from Zoe's hand/gaze/throat. Wyatt is either asleep on his tummy or quietly watching everything. They usually start shouting around now and it is time to feed them again. Which we do, including real food. Babies are changed again as we have to hose them both and the kitchen down. There is another Medela moment.

Then it is nap time.

Naps are a real bone of contention around here. I'm all for them. I am pro-nap. I would rather we all have a little siesta in the afternoon and go to bed a little bit later then have the alternative which involves a lot of screaming, crying and general carry-on. Quinn napped right up until last year when his daycare provider "helpfully broke him of the habit" [translation: felt it was stupid and since she drove around all afternoon ferrying various children hither and yon, it was an easier for her]. If anyone needs a nap around here in the afternoon (other than me, of course) it is him. If he doesn't sleep, he is an absolute terror by suppertime and most of that time will be spent on the stairs in "time out". A nap for Wyatt and Zoe will be attempted. They both may nap for a few moments initially, but that will end. Especially if Quinn is actually asleep as we can only have two out of the three napping at the same time. One will wake up, (usually Zoe) and be screechy. Assuming she won't go back to sleep after her soother is found and replaced and hasn't woken up her twin, she'll be brought down to the living room to play. Where she will until she passes out an hour later, at which time Wyatt wakes up hollering. If Wyatt wakes up first I can bring him down and plunk him in the swing and he will sleep, but this only happens if Quinn is awake. Confused yet? All of this boils down to NO NAP FOR MOMMY. None. Dee-nied.

Now it is somewhere around 3 or 3:30. My eyes are closing now whether I like them to or not. I hit the Tassimo. It is short lived as I seem to be able to metabolize caffeine very fast. I am even more tired 45 mins later. Sean may stumble off to have a nap or have one downstairs as he is entertaining Quinn. Babies are changed post-nap and put on the floor again. I may scatter toys around and let Indiana Zoe discover them or lay on the floor and play with them. One of them will have a "problem" (fussy) so as one parent goes off to do whatever project they had to do for the day, the other entertains kids (usually me). Now there is talk of dinner. Sean goes off to make that/set up the baby food as I start feeding the babies. More highchair time. More hosing. More diaper changes. Another Medela moment.

Dinner is prepared and scarfed down in record time as there is usually at least one member of the family crying or having an issue. Dishes are attempted, but usually abandoned in the sink. Issues are addressed and babies are played with as Quinn putters around us, interacting with some or all of us. It is somehow around 8 now (I am surprised each and every time). Babies are taken upstairs and if it is a bath night, that ritual is begun. One of us (we alternate when I am home) is in charge of undressing, un-diapering, towel wrapping, towel unwrapping, drying off, diapering and jam-ifying. The other is in charge of bathing. We started out each washing a baby with two tubs but we found that an assembly line type operation works better. One of us nips off to make up their bedtime "top up bottle" (of EBM) and then its more feeding. One of us each gives a bottle (we alternate), snuggles and then they are put to bed. It is now somewhere between 8:30 and 9:30. Quinn's needs are now met (he bathes opposite to the babies... it was a compromise that makes our evenings not drag on forever) and he is put to bed, usually by Sean as I am having another Medela moment.

Depending on what Monday morning will bring, we either have a few moments to ourselves or one of us is doing laundry or escaping for some alone time. Or collapsing in a heap in front of the TV. If I'm working the next day, I'm off to bed. G'bye Sunday, we hardly knew ye.

So, to answer the question "How do you find time to do it all", the answer really is "I don't". I also don't even try any more. "Fires" are put out and we do the bare minimum. Larger cleaning projects are tackled just like that: as a large project that takes up a block of time. Despite all the multitasking and my ability to do just about anything while holding a baby (including write this) , it doesn't get done. Oh well. It used to drive me nuts, but I've come to terms with it. It will all get done... eventually.

Our "day of rest", like any other parents, is a joke. We have to do two loads of baby laundry a day to keep up with them. I still wouldn't trade it for the world. Quinn, when not being "Dynamo: The Kid Dramatic" is really freaking funny and his younger siblings are completely edibly adorable. I know I have said this before, but Sean and I are incredibly lucky to have each other. It works. It gets done. I don't know how, but it does. Much like this blog entry, which has taken a ridiculous amount of time to write (and is probably poorly edited).

What You Have to Say About Down Wit Dat:

"Just wanted to let you know how much I admire you. I know you fight a lot of demons, both yours and for others, yet you still maintain that fantastic sense of humor, and more importantly, fairness. You are a constant source of light in the darkness, because you are beautiful inside and out..." - S. R.

"...Wonderfully written and one thing Jen does with her writing is make you stop and think ...and think hard." - J. Toner

"Before I had my little L., I never knew anyone with down syndrome, your page has given me so much hope for my little boy, the people who post pictures of their children and the things that you post are wonderful, its made it easier for me to understand and get used to, thank you, keep doing what your doing with the good work, much appreciation. X." - L. Barnes

"Your post (and the posts of others that you linked to) actually made me tear up a little. Growing up with a brother with Downs, I actually got into fist-fights because of "that word". Hearing it used as a derisive and insulting term by people who should know better (or by those who do know better but are just looking for attention in the case of Coulter) is NEVER ok. Thank you for speaking out.﻿" - I. Thomas

"I love these history posts. This is a TON of work on your part, thank you so much!" --N. Haegele

"I don't have any children yet, and I'm not sure how I ended up reading your blog. But it is absolutely inspirational. I'm so glad Wyatt was born into your family where I am sure he can live a happy fulfilled life." --artandtourism

"Above all, Jen is an amazing mother. She is honest and real, and inspires me everyday to love my "typical" child the way he needs to be loved, respect him as a person, and not even for one single second take him, or anything for granted. She allows me to venture into her life, and care about her and her family. What dear little children she has blessed the world with. She is planting seeds, nurturing and growing her family (and extended reader family) into people who will make this world a better place. Why aren't we all more like that?" —Penny

"Jen and her family have an amazing story and mission. Jen's writing reflects the difficult and triumphant steps of life with a special needs child; twins at that, and a older sibling. Thank you for sharing your families' strength with the on-line community."--S.B.

"I think I'm a little bit in love with Jen, and if she lived down the road I might just be a blogging groupie, not because I'm a crazy stalker I hasten to add, but because the easy warmth in which she tells her story convinces you that you are simply having an easy chat with your best friend. She has a subtle wit and craft to her blog posts, they are not just splurges of untamed emotion. This enables her to not only tell her story with honesty and in an enjoyable way, she also manages to impart a message without coming across as patronising or preaching. It's a rare gift for a blog about special needs."— Renata

"Having a child with special needs can be an isolating experience -- even more so when you live half a world away from your friends and family. Due to this, the internet became my primary source of support and camaraderie with other parents in similar situations. I read dozens, if not hundreds, of blogs about being the parent of a child with T21, and though most had positive points, for the most part they just didn't 'speak' to me and what I was feeling. Then came Jen and 'Down Wit Dat'. Suddenly, I heard a voice that was in harmony with the things I was feeling and going through. Her writing is so brutally honest, while at the same time insightful and informative...not to mention FUNNY! If there has been one thing I've learned on this journey, it's the importance of keeping your sense of humour -- even when you seem to be losing your sanity. Thank you so much, Jen, for putting out there the human, REAL side of our special club -- and being a voice for those of us that are so often unheard." — Dee

"I love the honesty, Jen never glosses over the difficulties and never fails to celebrate the victories. My children are not special needs but I can always find commonalities and it has opened my eyes to the fact that people with Down syndrome are not as different from the rest of us as they might initially appear. Since I've known Jen and been reading her blog my attitudes toward respect, and what it means, have changed. "The "r" word" particularly hit home as I had been ignorant to the effects of the use of that word. I do my best to help spread the message."--Susanne

"I have been following this blog for months now. I have nothing but positive thoughts and warm fizzy feelings when reading it. My only regret is not having found this blog when it was originally started. One piece that particularly sticks out to me, was the blog about the "r" word. I don't think I have actually cried so much reading a blog that wasn't about someone dying. I printed it off and shared it with many friends, because Jen is right. She struck a nerve and made me realize that not only myself, but there are many others around me that use that word without realizing how powerful it really is. Down Wit Dat is a blog full of enthusiasm, awareness, whole heartedness, truth, encouragement, laughter, but best of all, its full of Jen, FAMILY, and a look at what having a special needs child is about. Keep writing. You're amazing!" —B. Nason

"I love Jen's take on the special hand that she and her family have been dealt. I especially love that while she shares all her son's small victories she doesn't gloss over the challenges that she and her family face. The best thing I love about Jen and her blog is that she is constant supporter of the rights and challenges of kids and adults with Down Syndrome. She has provide a lot of insight that has opened my eyes and many others. I especially loved her blog about the "r" word. It opened dialogue with my family, friends and groups that I am a part; and I am much more conscientious about the words I used to describe people"--V. Saenz-Brown

"Jen's blog is wonderful! While I do not have a down child, as a mom, I relate to the everyday struggles of just doing your best, of the struggles, the heartaches, the joys of everyday life. Jen writes in a positive and uplifting style with just the right doses of humor thrown. Great read!" —Terra

"This blog is written from the parents perspective, which is important. Jen's story is not unique, but the way she tells it, with humor and honesty is wonderfully refreshing. It brings a real perspective that people can understand and relate to, and is a resource for parents of not just Down Syndrome kids but of all kids to know that life may not be perfect but that everyone has a unique way of dealing with it."—Kimberly

"I too am the mother of a down child. It gives me great giggles, sorrow, and camaraderie to read her blog daily. I find it makes life's little challenges more bearable. She is honest, upfront and a wealth of information. And I think her attitude is one many of us share and embrace. Even if she does not win, she is a huge winner already in my book. Lots of luck and love to her and her amazing family." —L.Grassa

"I love Down Wit Dat because Jen is so honest about her experience as a parent. Jen is not afraid to write about her vulnerability, anger, fear, joy, or love. She's an amazing writer! Jen's description of her blog is so bang on! I laugh and I cry, sometimes simultaneously."—Marla

"I am currently a Disability Services major in college and for my one class we had to find a blog by a parent who has a child with a disability to follow and discuss with the class every week. I have been following your blog for a couple weeks now and I get so excited to talk about little Wyatt and what an amazing family he has and the struggles and victories that you all over come daily! Someday down the road I hope to have children and if I am granted a special needs child I can only hope that I can handle everything that comes my way as positive and good as you do! You are doing an amazing job and are a great mother! Thank you so much for sharing your story!"--Anonymous

"Your blog is incredibly inspiring. I have laughed out loud, been in tears, and everything in between! it's fabulous." -HDSSG

"If you haven't been told today... you're awesome." - Trevor

"Wyatt is fortunate to have such a mom." - Anonymous

"...Thanks for your honesty and insightful points. It helps put our own thoughts into words to pass on when we encounter the same situations." - P

"I am enjoying reading your blog. I taught preschool/education for about 35 yrs and most of it was spent in CA where there is encouraged mainstreaming. I enjoyed having special needs kids...they bring a special and fun element into the classroom! I also had a young man with Downs who was my class helper at one time...he was so much fun! I wish people knew these things....as there are preconceived ideas..." - Jenny

"I remember speaking with you when you found out about the possibility of one of the babies having some abnormalities, and you did not know how you would handle it. My response was, once the situation arises you will find ways to deal with it. I must say, you have done so well with your children, especially with Wyatt. You are not ashamed to embraced what God has blessed you with, and to share your new found info with others who might be less fortunate, and to those who might be less accepting. I am sure you have empowered many people who are in the same situation and need a little love and support. You've turned negatives into positives. I must say you are an awesome mom. Keep up the good work, it not going unnoticed." - K. Garwood

"... I just started reading from the beginning... I am intrigued. It is so incredibly well written with so much love. There were parts I would start to cry. I felt your sadness and your happiness and your passion. These children are so lucky to have you as their mother. I can't wait to read the rest of it and get caught up!!! Thank you so much for sharing your life with us! ?" - M. Laine

"Just had a few minutes to read more of the blog and I must say I LOVE it! I could not agree more that so much of the info I found as a new mom was SO depressing. I didn't jump for joy with the dex of T21 but it wasn't anything I could change so we accepted -and started to read everything we could get our hands on. Can't wait to read more..." - E. Chesnut

"I wanted to say I love your blog. You write so honestly... Thank you for writing so candidly." - M. Antushevich

"Found your page completely randomly while trying to connect with other wine blogs like myself. I do not have any kids or know anyone with Down Syndrome but your blog really captivated me. I guess that is how good it is. Keep up the good work :) " - The Frugal Tasters

"There are going to be many times when i say how courageous you are! I do not think it can be said enough, you take YOUR time to educate and inform and rid parents of their fears! THANK YOU THANK YOU THANK YOU . I wish my kids were old enough to read and understand! Hopefully one day the maturity level will be there so they can and come to appreciate life more not for the big things but for the everyday moments that will mean more than the big ones EVER will! ?" - C. Cochran

"I, too have a son name Wyatt who happens to have an extra 21st! He was born 2/15/11! Thanks for sharing your story. We're in good company : ). " - R. Scheerer

"My daughter will be 8 in Nov. Unfortunately, my parents I felt were ashamed of my daughter. If only they had gotten to know her before they passed on....." - A. Welsh

"I always enjoy your straight forward, tell it like it is posts. People need this information. They need to know how their ignorant, or often well intentioned but uninformed, words and actions are frustrating, annoying and/or hurtful." - Shayna